Day 186
(Wednesday and) Thursday November 28, 2013
Physical:
On Wednesday he was cranky, but that might have been just left-over tired. He refused to stay in bed, so it was "up-and-down" several times. On Thursday he also insisted on getting up early I believe that was because he somehow understood that company was coming, but wanted to "get home in time". He was upset that I put him in a chair "in church", but when peole came he was OK.
It was clear from his conversation that he was very disoriented, but everyone was good at playing along. By the time I got him down for the night he was pretty exhausted! He ate a pretty good Thanksgiving dinner.
People:
The CNA came on Wednesday. Late in the afternoon Fed-Ex finally picked u the old cycler. And later DSS and TGF came by - she had gotten the rest of the groceries for me.
On Thanksgiving, some of the timing was "off", but all went well. We had DSS, his girlfriend and all 4 of her boys, her mom, her sister, her brother-in-law, his 2 boys plus their little boy. DSS's business partner and his wife came, very nice couple. DS and his wife and 2 kids came. So there was a total of 20 of us. My only "regret" is that there is no room in my house for everyone to be "together". DS and his family and I mostly stayed in the living room with DH (and watched a James Bond marathon loud enough to make ears bleed. :( Hopefully for Christmas he will get a headset!!!). Other than DS's 2 kids (boy and girl), the rest of the boys (ages 4 to 17) bounced back and forth between playing outside and the TV in the den. Everyone else congregated in the kitchen (except DSS who was in a snit and didn't even come over til the last minute). At one point DH tried to get up, though he was going to the back of the house to visit with more people. I had to get DSS to come out and spend some time with his dad! It was after 10:00 before DS and family left. I was so glad they stayed, but also exhausted when they left.
Emotions:
I was very frustrated at not being able to have a "family meeting" as the nurse has been urging me to do. Both my DIL and TGF had health issues; and as I said, DSS was in a bad mood and didn't even show up until last minute. For that matter, TGF and her family did not get here as early as they had said they would, so it was a rush to get all the food ready.
I'm feeling sad and depressed this morning, but I know a lot of that is being tired. DH is worn out, it's after 10:00 and he's still sleeping! For the most part the house didn't get "destroyed", and I think I have most things put to rights. I have to sort and put up a lot of flatware; and there is a huge mountain of dishes waiting (and some were done last night; in fact, one of the guests washed a big load before she left, but almost all the serving dishes had not been emptied at that point). There's not even very many left overs (although a turkey breast that we didn't have time to cook is in the oven now, so DH and I will at least have some turkey sandwiches!!).
I did get some time to talk to DIL, and they will try to come back during December; plus they are coming Christmas Eve. DH has his next clinic then, and that will be good for them to go along since DSS has out of town company coming.
My house is usually all decorated by now ... and I still have to pack u the fall stuff. I really feel discouraged. Maybe by tomorrow I can get the things paced up and at least make a start on Christmas. I'm hoping it will brighten my mood to have my decorations up!
Friday, November 29, 2013
Wednesday, November 27, 2013
Day 184
Day 184
Tuesday November 26, 2013
(note: not sure if I'm keeping track of day number correctly, but it doesn't really matter that much).
Physical:
It was a very tiring day because of having to go to clinic. DH did not show a lot of "obvious" signs of his confusion or disorientation (when asked where we're going after clinic, he said to my mom's house). The people there just aren't seeing him as a whole person - they only see lab results. So the doctor was mumbling about his dialysis not doing quite as well as it has been, and at the next clinic they may want to add a manual exchange. But, it will be a different doctor then. The nutritionist was - again - yammering at him to eat more, his protein is low I mostly try hard to just bite my tongue and endure - they see him once a month, the hospice nurse sees him every week. And she is seeing the whole person.
It was raining, but at least the heaviest rain wasn't until late in the day. Still, we got wet getting him out of the car. Thanksfully we got him in and out with not as much trouble this time.
Once we got home, he went straight to bed for the rest of the day (which I expected, getting out like that really wears him out .. a fact which the clinic never realizes). I made him a sandwich;sandwich in the afternoon, and he ended u with a petty late supper; but all he ate was a pork chop anyway.
People:
Clinic,, of course, means a bunch of people who all feel obligated to come in and discuss the same things .. ignoring how tired he is obviously getting. The nurse did help me with the last bit of programming for the cycler. In the evening 2 of the boys stayed here (was fine since he was sleeping) while TGF and I tried to go finish grocery shopping. That was a failed effort, but a story for another time and place.
Funny note: the boys have "discovered" the "talk" button on the monitors. At one point DH got a coughing spell; and the 11 y/o spoke into the monitor and told him "it's OK grandpa, we're here". Poor DH had no idea what was going on!
Emotions:
Yesterday was pretty much a lost cause. It was very late in the afternoon before I had water (but thankfully, not only is the pum repaired but they also fixed the leak I was sure that was somewhere near the laundry room). Then the shopping excursion turned into a disaster. Well, OK, not really "disaster"; but failed anyway. By the time I got home, got dialysis wet up, got sorted out for the night, I was too tired to to be depressed, even though by then the wind was shrieking and the rain was thundering down hard.
It's still raining this morning, but hopefully I have so much I need to get done that I won't have time to be depressed. Stressed, yes! LOL! But not sad.
Tuesday November 26, 2013
(note: not sure if I'm keeping track of day number correctly, but it doesn't really matter that much).
Physical:
It was a very tiring day because of having to go to clinic. DH did not show a lot of "obvious" signs of his confusion or disorientation (when asked where we're going after clinic, he said to my mom's house). The people there just aren't seeing him as a whole person - they only see lab results. So the doctor was mumbling about his dialysis not doing quite as well as it has been, and at the next clinic they may want to add a manual exchange. But, it will be a different doctor then. The nutritionist was - again - yammering at him to eat more, his protein is low I mostly try hard to just bite my tongue and endure - they see him once a month, the hospice nurse sees him every week. And she is seeing the whole person.
It was raining, but at least the heaviest rain wasn't until late in the day. Still, we got wet getting him out of the car. Thanksfully we got him in and out with not as much trouble this time.
Once we got home, he went straight to bed for the rest of the day (which I expected, getting out like that really wears him out .. a fact which the clinic never realizes). I made him a sandwich;sandwich in the afternoon, and he ended u with a petty late supper; but all he ate was a pork chop anyway.
People:
Clinic,, of course, means a bunch of people who all feel obligated to come in and discuss the same things .. ignoring how tired he is obviously getting. The nurse did help me with the last bit of programming for the cycler. In the evening 2 of the boys stayed here (was fine since he was sleeping) while TGF and I tried to go finish grocery shopping. That was a failed effort, but a story for another time and place.
Funny note: the boys have "discovered" the "talk" button on the monitors. At one point DH got a coughing spell; and the 11 y/o spoke into the monitor and told him "it's OK grandpa, we're here". Poor DH had no idea what was going on!
Emotions:
Yesterday was pretty much a lost cause. It was very late in the afternoon before I had water (but thankfully, not only is the pum repaired but they also fixed the leak I was sure that was somewhere near the laundry room). Then the shopping excursion turned into a disaster. Well, OK, not really "disaster"; but failed anyway. By the time I got home, got dialysis wet up, got sorted out for the night, I was too tired to to be depressed, even though by then the wind was shrieking and the rain was thundering down hard.
It's still raining this morning, but hopefully I have so much I need to get done that I won't have time to be depressed. Stressed, yes! LOL! But not sad.
Tuesday, November 26, 2013
Day 183
Day 183
Monday November 25, 2013
Physical:
It was actually not a good day, but I can't quite put my finger on what was "wrong". DH's mind seems to have taken another turn that I can't quite follow. He's never been able to accept (no, I guess "realize" is a closer word) that he can't just get up and walk. But he's getting more agitated about it, and edging on getting haateful. Actually, last night, around midnight, he really was nasty to me. That's not happened before. And just knowing it's something in his mind that he can't control does not make it any easier to take - especially in the middle of the night when I'm already tired.
One minor "accomplishment", for the last couple of days he's managed to eat without dropping food on the floor or bed.
People:
It was a little busy in spurts; but spending all day *waiting* is frustrating. The CNA came around 1:00 or so .. and her visit overlapped with the social worker. Although her (S/W) visit was more like a friend dropping by than a "professional" check in, it still didn't leave me feeling as comforted as before.
The supply truck came too, but not until so late in the afternoon that it was getting dark.
Emotions:
I feel ragged this morning. The last two nights, for different reasons, have been too short and stressful. On top of everything else, last night the power went out. The entire neighborhood was dark for about 10 to 15 minutes. And when it came back on .. after I reset the cycler .. I realized we had no water. I can cope, up to a point, for a short time. But I have 16 guests coming for Thanksgiving in 2 days .. I have laundry to do, dishes in the sink. Not to mention everyday things like aSHOWER!!
DH has his monthly appointment at the dialysis clinic, and I'm dreading that. Not only is it hard to get him in and out of the car, the weather forecast is for rain .. a lot of rain. At least it won't be freezing cold.
I know it's not "logical" to expect someone to be here all the time. I don't even WANT someone here that much. And yet so much time I sit here I feel so alone. I can't leave, and yet he's no longer hwere "with" me. We can't even carry on conversations any more.
I feel like maybe I wanted to say more .. but he's "rattling his cage", so I need to go get him up and dressed for his appointment today.
Monday November 25, 2013
Physical:
It was actually not a good day, but I can't quite put my finger on what was "wrong". DH's mind seems to have taken another turn that I can't quite follow. He's never been able to accept (no, I guess "realize" is a closer word) that he can't just get up and walk. But he's getting more agitated about it, and edging on getting haateful. Actually, last night, around midnight, he really was nasty to me. That's not happened before. And just knowing it's something in his mind that he can't control does not make it any easier to take - especially in the middle of the night when I'm already tired.
One minor "accomplishment", for the last couple of days he's managed to eat without dropping food on the floor or bed.
People:
It was a little busy in spurts; but spending all day *waiting* is frustrating. The CNA came around 1:00 or so .. and her visit overlapped with the social worker. Although her (S/W) visit was more like a friend dropping by than a "professional" check in, it still didn't leave me feeling as comforted as before.
The supply truck came too, but not until so late in the afternoon that it was getting dark.
Emotions:
I feel ragged this morning. The last two nights, for different reasons, have been too short and stressful. On top of everything else, last night the power went out. The entire neighborhood was dark for about 10 to 15 minutes. And when it came back on .. after I reset the cycler .. I realized we had no water. I can cope, up to a point, for a short time. But I have 16 guests coming for Thanksgiving in 2 days .. I have laundry to do, dishes in the sink. Not to mention everyday things like aSHOWER!!
DH has his monthly appointment at the dialysis clinic, and I'm dreading that. Not only is it hard to get him in and out of the car, the weather forecast is for rain .. a lot of rain. At least it won't be freezing cold.
I know it's not "logical" to expect someone to be here all the time. I don't even WANT someone here that much. And yet so much time I sit here I feel so alone. I can't leave, and yet he's no longer hwere "with" me. We can't even carry on conversations any more.
I feel like maybe I wanted to say more .. but he's "rattling his cage", so I need to go get him up and dressed for his appointment today.
Sunday, November 24, 2013
Day 182
Day 182
Saturday November 23, 2013
Physical
DH stayed in bed all day, except for a half an hour or so "potty break" (which was nearly a disaster .. he really is getting too weak to get him up and down safely). He didn't feel "bad", but he just didn't want to get up. He didn't eat a huge amount, but at least he did eat. His confusion level was about the same .. it's a daily guessing game as to where he thinks he is.
The down side of the day came when it was time to set up dialysis. Just like the night before, more than half way through the set up I got a "system error". So I just stopped and tried what worked before ... starting over with a new cassette. Well, that didn't work this time. In the exact same place I got the same error. Since all the solution bags had already been "accepted" (acknowledged), there's nothing else that can be wrong except the machine itself. And there's no way I can call about the machine because no matter how hard I try, I cannot read the numbers.
He'll be OK (not "great", but OK) to miss one night. The nurse even told me that .. the last time he "broke" his catheter, he said it would have been all right until morning if I hadn't caught him before leaving the clinic.
However, more than one night would not be a good idea (a long time ago another dialysis nurse told me he wouldn't survive more than 3 nights without dialysis. I think, given his track record, he would .. but I'm not at all willing to test that theory!!!). So, TGF *said* she'd come by this morning on her way to church and help me with those numbers. I'm hoping if I can call early enough they'll send a replacement machine today! At some point today I will do at least one, maybe 2, manual exchanges; but I don't think there are enough of the right kind of supplies for more than that.
People:
Since he stayed in bed, DH didn't see anyone all day. DSS stopped by briefly, but when he poked his head in the room, DH was sleeping. I had a friend and some of her family for supper, and we had a nice visit. She brought some food he will enjoy, and gifts.
Emotions:
It's a shame he didn't want to get out of bed all day. It was our anniversary. Oh well, we've had worse! LOL! Most of the day was fairly calm, and I had enough to do to keep from sitting around getting sad. I sort of watched a Christmas parade .. had to watch on TV, couldn't find it online. But the cameras stayed mostly on the parade this year, for a change! The evening got very upsetting with the dialysis problem. It's bad enough when the machine goes bonkers. But my not being able to see well enough to read the screens, or the numbers, is very scary. DH is not capable of remembering how limited my vision is .. or that he can't just get up and walk over to the machine himself. (and even if he could, he'd stare at it for 20 or 30 minutes and not have a clue what he's supposed to be looking for!).
So a relatively nice day ended with frustration and discouragement.
I consoled myself with cake. :(
Saturday November 23, 2013
Physical
DH stayed in bed all day, except for a half an hour or so "potty break" (which was nearly a disaster .. he really is getting too weak to get him up and down safely). He didn't feel "bad", but he just didn't want to get up. He didn't eat a huge amount, but at least he did eat. His confusion level was about the same .. it's a daily guessing game as to where he thinks he is.
The down side of the day came when it was time to set up dialysis. Just like the night before, more than half way through the set up I got a "system error". So I just stopped and tried what worked before ... starting over with a new cassette. Well, that didn't work this time. In the exact same place I got the same error. Since all the solution bags had already been "accepted" (acknowledged), there's nothing else that can be wrong except the machine itself. And there's no way I can call about the machine because no matter how hard I try, I cannot read the numbers.
He'll be OK (not "great", but OK) to miss one night. The nurse even told me that .. the last time he "broke" his catheter, he said it would have been all right until morning if I hadn't caught him before leaving the clinic.
However, more than one night would not be a good idea (a long time ago another dialysis nurse told me he wouldn't survive more than 3 nights without dialysis. I think, given his track record, he would .. but I'm not at all willing to test that theory!!!). So, TGF *said* she'd come by this morning on her way to church and help me with those numbers. I'm hoping if I can call early enough they'll send a replacement machine today! At some point today I will do at least one, maybe 2, manual exchanges; but I don't think there are enough of the right kind of supplies for more than that.
People:
Since he stayed in bed, DH didn't see anyone all day. DSS stopped by briefly, but when he poked his head in the room, DH was sleeping. I had a friend and some of her family for supper, and we had a nice visit. She brought some food he will enjoy, and gifts.
Emotions:
It's a shame he didn't want to get out of bed all day. It was our anniversary. Oh well, we've had worse! LOL! Most of the day was fairly calm, and I had enough to do to keep from sitting around getting sad. I sort of watched a Christmas parade .. had to watch on TV, couldn't find it online. But the cameras stayed mostly on the parade this year, for a change! The evening got very upsetting with the dialysis problem. It's bad enough when the machine goes bonkers. But my not being able to see well enough to read the screens, or the numbers, is very scary. DH is not capable of remembering how limited my vision is .. or that he can't just get up and walk over to the machine himself. (and even if he could, he'd stare at it for 20 or 30 minutes and not have a clue what he's supposed to be looking for!).
So a relatively nice day ended with frustration and discouragement.
I consoled myself with cake. :(
Saturday, November 23, 2013
Day 181Day 181
Day 181
Friday November 23, 2013
Physical
DH had a fairly good day I think. He was a bit muddled early this morning, but seemed to (mostly) come out of it.by later in the morning. He ended up sitting in his chair a very long time. That was not completely his choice, but the way it worked out. He napped there though, and was OK. By evening he was getting confused again, but that's the "new normal". He ate fairly well too.
People
An odd day of people in and out, but not what was expected. The dialysis nurse came by 930ish to draw blood for labs for next week's appointment. The CNA got here very shortly after the nurse left, very early for her. But the long afternoon was a string of disappointments, as at least 3 people either expected or "promised" (even though I know not to believe) never showed up, called, or anything. It really makes me feel abandoned. In the evening, however, DSS and crew came, and I got out of the house for an hour to go to the Lights! That was very nice.
Emotions
As I said, a lot of disappointments. My friend said she'd come .. and it was a very nice day .. but of course she didn't. Now there will be no more nice days for who knows how long, and I still don't think any yard decorating will get done. And of course I have people telling me I shouldn't worry about it, they're not important, blah blah blah. Well I *know* they're not important. But why is it that things that matter to me are always just brushed off as "unimportant"? And what right do people (especially ones who can't be bothered to help me out in any way, either personal or with DH's care, ) have the right to tell me what is or isn't important? DH's sister, who had said she'd come by during the week to help sort books, never came by or called. And the social worker, who said she'd come "every 2 or 3 weeks" now hasn't been by in 4 weeks. I really enjoyed talking with her; apparently that was not mutual!
On top of that, I decided to set up dialysis early (because I needed to *do* something!), and ran into a problem. Part way through set up, I got an alarm and a "red screen". I've been told that means to STOP; but I don't know why. I finally took a picture of the screen, downloaded it, and enlarged .. and all it said was "system error". DSS had been by earlier (all he was doing was dumping trash on the burn pile, but says he will burn it on Sunday), said he'd come back. I waited awhile, then decided I was on my own and had to try something. So I got out a new cassette and started over .. and it worked fine. Seems like there have been a lot of defective cassettes lately .. there are only a few left in that box, but I'm going to open a new box tonight!
Today will be a bit busy. I've already cleaned up most of the kitchen (when they came last night, they brought supper to warm up and eat here) and will do the floor soon. The rest of the house is at least clean. In a few hours I plan to try to watch a Christmas parade. It will be on TV, but the camera spends too much time on the hosts and not on the parade; so I'm going to try to watch it streaming live and see if that's any better.
Tonight a friend and some of her family are coming to supper .. a tradition of many years for the Saturday before Thanksgiving. They are going to see the lights, but I will be staying here with DH. Whether he realizes it or not, it's our 34th anniversary. He'll know if I tell him, he just won't remember. But I will be here anyway.
Friday November 23, 2013
Physical
DH had a fairly good day I think. He was a bit muddled early this morning, but seemed to (mostly) come out of it.by later in the morning. He ended up sitting in his chair a very long time. That was not completely his choice, but the way it worked out. He napped there though, and was OK. By evening he was getting confused again, but that's the "new normal". He ate fairly well too.
People
An odd day of people in and out, but not what was expected. The dialysis nurse came by 930ish to draw blood for labs for next week's appointment. The CNA got here very shortly after the nurse left, very early for her. But the long afternoon was a string of disappointments, as at least 3 people either expected or "promised" (even though I know not to believe) never showed up, called, or anything. It really makes me feel abandoned. In the evening, however, DSS and crew came, and I got out of the house for an hour to go to the Lights! That was very nice.
Emotions
As I said, a lot of disappointments. My friend said she'd come .. and it was a very nice day .. but of course she didn't. Now there will be no more nice days for who knows how long, and I still don't think any yard decorating will get done. And of course I have people telling me I shouldn't worry about it, they're not important, blah blah blah. Well I *know* they're not important. But why is it that things that matter to me are always just brushed off as "unimportant"? And what right do people (especially ones who can't be bothered to help me out in any way, either personal or with DH's care, ) have the right to tell me what is or isn't important? DH's sister, who had said she'd come by during the week to help sort books, never came by or called. And the social worker, who said she'd come "every 2 or 3 weeks" now hasn't been by in 4 weeks. I really enjoyed talking with her; apparently that was not mutual!
On top of that, I decided to set up dialysis early (because I needed to *do* something!), and ran into a problem. Part way through set up, I got an alarm and a "red screen". I've been told that means to STOP; but I don't know why. I finally took a picture of the screen, downloaded it, and enlarged .. and all it said was "system error". DSS had been by earlier (all he was doing was dumping trash on the burn pile, but says he will burn it on Sunday), said he'd come back. I waited awhile, then decided I was on my own and had to try something. So I got out a new cassette and started over .. and it worked fine. Seems like there have been a lot of defective cassettes lately .. there are only a few left in that box, but I'm going to open a new box tonight!
Today will be a bit busy. I've already cleaned up most of the kitchen (when they came last night, they brought supper to warm up and eat here) and will do the floor soon. The rest of the house is at least clean. In a few hours I plan to try to watch a Christmas parade. It will be on TV, but the camera spends too much time on the hosts and not on the parade; so I'm going to try to watch it streaming live and see if that's any better.
Tonight a friend and some of her family are coming to supper .. a tradition of many years for the Saturday before Thanksgiving. They are going to see the lights, but I will be staying here with DH. Whether he realizes it or not, it's our 34th anniversary. He'll know if I tell him, he just won't remember. But I will be here anyway.
Friday, November 22, 2013
Day 180
Day 180
Thursday, November 22, 2013
*note I did not realize it had been several days since I updated. Every now and then the days all just "pile up". There has been no drastic change,, just chugging along day by day.
Physical
While last week DH mostly just wanted to stay in bed, and seemed very weak .. this week he's been wanting to get up and down a lot. A few mornings he woke up very early (as early as 5 AM) .. most of the week he's been looking for car keys, or trying to start the car. As always, his mind is somewhere in the distant past. And as always, he wants to go home but is newly surprised each day that I (or someone) went to the trouble of duplicating all his things from home!
His aplpetite has been better ... but mainly because he's been eating food from his sister's cookout (mainly the barbecued pork) all week. He did better than he does with my cooking .. but then, I cook less and less (it's scary to try to cook something when you can't even tell if ground beef is browned or not!).
He's not had any more episodes of not taking his pills, although every once in awhile he gets annoyed at so many of them.
People
From his point of view there haven't been many people here. The CNA has come every day, and the nurse came Wednesday (though not as early, and she and the CNA were here at the same time). I've not heard another word from the social worker, and it's been 4 weeks (today, Friday) since she last came. (I would like to think she's embarrassed to come because of broken promises ... we apparently are not getting any "volunteer" help of any sort). But I doubt she's even thought about it.
The neighbor came yesterday afternoon. Oh, forgot, she brought some soup over a few days ago .. so hot I couldn't even breathe fumes from it!! Nice gesture, but we couldn't eat it). The oldest daughter came with her, they wanted to use the phone. Then they talked for a few minutes, then as always wanated to pray for Jimmy. Now, clearly, neither of us has any objection to someone wanting to pray. But I find her a bitoverwhelming. I don't speak Spanish, but can pick up a word or two and a friend who droppped by overheard some, and was getting the same impression. The lady does not understand DH's condition, so has decided that he's merely very old and feeble. She *demands* that God "cure" or "heal" him immediately. I'm familiar with the concept of "claiming a victory" but I've never seen it applied this way. It makes me very uncomfortable. And it makes me even more uncomfortable to be in a position of questioning the way someone prays! But at least I can say DH has no clue what's going on, and he's OK with it all.
On Thursday I had a lady come in half the day and help me clean ... she's excellent at getting dusting in particular, and gave the whole house a really good thorough cleaning. He did not get out of bed until after she left .. shortly after she was done the CNA got here for his bath. I told her just go on and get him up. All week he's been saying he wantd to stay in bed but less than an hour after she leaves, he wants to get up.
Emotions
Frayed around the edges to say the least. The stuff with the neighbor makes me uneasy, and no one to talk to about it (the friend that was here never listens to me, she just talks all the time. she never asks how I'm doing. She claims she doesn't like to be around DH becuase it upsets her to see him going through the same thing her mom did. I tell her he's not in pain .. and she insists he is and just doesn't want to tell me or he's in terrible pain on the inside, she can tell even though he can't. Huh? )
It keeps the blues away if I keep busy but there are times there's nothing I can do, or I'm too tired or have achy joints. Sometimes crying spells sneak up on me.
I've been working on cleaning house (not the washing and dusting done yesterday, but organizing and purging drawers and closets). My failing vision has forced me to start giving away books, and that really hurts. It's kind of a "Catch 22" I guess .. depressing to sit around and do nothing but listen to the TV (yes, I can "see" it, but only a blur of color and movement). It also depresses me to give away things I love. It depresses me to be stuck here all the time with so little contact with family or friends (and sorry, but a lady the age of my boys who doesn't even speak English is not my idea of a "friend"!). There have been very few times I've been away from DH any length of time, and then only when he was with family. I need a break, I need to get away to do something besides grocery shopping but at the same time, I'm uneasy about leaving him ... there are just so many "variables".
Today, at least, might be busy. The dialysis nurse is coming by to draw blood for labs for the clinic appointment next week (no way to get out of that. Medicare doesn't care what condition a person is in .. if you're on dialysis, you MUST physicallly see a nephrologist once a month.The CNA will come today. DH's sister told me she'd come one afternoon this week to help sort some books. She hasn't come yet if she doesn't come today, I won't bother to call her. She's always saying call if you need anything .. but what's the use if she doesn't show up anyway?
My friend *might* show up today; but she's let me down so often I really don't count on anything.
My friend offered to stay with DH for a day so my DIL can take me to a Christmas parade (my DGD is in marching band in the parade). There is NO WAY I would leave her to take care of DH for a day! For one thing, every single time she comes over here she's limping and yelping how much this or that hurts .. she would not be capable of moving him. I dodn't know if anyone else would either, but I know she can't. For another, she gets all blubbery because the sound of the oxygen concentrator reminds her of her mom. And I won't leave DH with someone who claims to have so much "insight" that she knows how he feels and what he's thinking, even when he doesn't! And if she got all weepy again talking about her mom, I'm afraid she'd get him upset. So no matter how well meaning her offer was, that will NOT happen! If there's no one I can trust completely available at the time, then I'll have to wait for a different opportunity.
It's time to get this potentially busy day started.
Thursday, November 22, 2013
*note I did not realize it had been several days since I updated. Every now and then the days all just "pile up". There has been no drastic change,, just chugging along day by day.
Physical
While last week DH mostly just wanted to stay in bed, and seemed very weak .. this week he's been wanting to get up and down a lot. A few mornings he woke up very early (as early as 5 AM) .. most of the week he's been looking for car keys, or trying to start the car. As always, his mind is somewhere in the distant past. And as always, he wants to go home but is newly surprised each day that I (or someone) went to the trouble of duplicating all his things from home!
His aplpetite has been better ... but mainly because he's been eating food from his sister's cookout (mainly the barbecued pork) all week. He did better than he does with my cooking .. but then, I cook less and less (it's scary to try to cook something when you can't even tell if ground beef is browned or not!).
He's not had any more episodes of not taking his pills, although every once in awhile he gets annoyed at so many of them.
People
From his point of view there haven't been many people here. The CNA has come every day, and the nurse came Wednesday (though not as early, and she and the CNA were here at the same time). I've not heard another word from the social worker, and it's been 4 weeks (today, Friday) since she last came. (I would like to think she's embarrassed to come because of broken promises ... we apparently are not getting any "volunteer" help of any sort). But I doubt she's even thought about it.
The neighbor came yesterday afternoon. Oh, forgot, she brought some soup over a few days ago .. so hot I couldn't even breathe fumes from it!! Nice gesture, but we couldn't eat it). The oldest daughter came with her, they wanted to use the phone. Then they talked for a few minutes, then as always wanated to pray for Jimmy. Now, clearly, neither of us has any objection to someone wanting to pray. But I find her a bitoverwhelming. I don't speak Spanish, but can pick up a word or two and a friend who droppped by overheard some, and was getting the same impression. The lady does not understand DH's condition, so has decided that he's merely very old and feeble. She *demands* that God "cure" or "heal" him immediately. I'm familiar with the concept of "claiming a victory" but I've never seen it applied this way. It makes me very uncomfortable. And it makes me even more uncomfortable to be in a position of questioning the way someone prays! But at least I can say DH has no clue what's going on, and he's OK with it all.
On Thursday I had a lady come in half the day and help me clean ... she's excellent at getting dusting in particular, and gave the whole house a really good thorough cleaning. He did not get out of bed until after she left .. shortly after she was done the CNA got here for his bath. I told her just go on and get him up. All week he's been saying he wantd to stay in bed but less than an hour after she leaves, he wants to get up.
Emotions
Frayed around the edges to say the least. The stuff with the neighbor makes me uneasy, and no one to talk to about it (the friend that was here never listens to me, she just talks all the time. she never asks how I'm doing. She claims she doesn't like to be around DH becuase it upsets her to see him going through the same thing her mom did. I tell her he's not in pain .. and she insists he is and just doesn't want to tell me or he's in terrible pain on the inside, she can tell even though he can't. Huh? )
It keeps the blues away if I keep busy but there are times there's nothing I can do, or I'm too tired or have achy joints. Sometimes crying spells sneak up on me.
I've been working on cleaning house (not the washing and dusting done yesterday, but organizing and purging drawers and closets). My failing vision has forced me to start giving away books, and that really hurts. It's kind of a "Catch 22" I guess .. depressing to sit around and do nothing but listen to the TV (yes, I can "see" it, but only a blur of color and movement). It also depresses me to give away things I love. It depresses me to be stuck here all the time with so little contact with family or friends (and sorry, but a lady the age of my boys who doesn't even speak English is not my idea of a "friend"!). There have been very few times I've been away from DH any length of time, and then only when he was with family. I need a break, I need to get away to do something besides grocery shopping but at the same time, I'm uneasy about leaving him ... there are just so many "variables".
Today, at least, might be busy. The dialysis nurse is coming by to draw blood for labs for the clinic appointment next week (no way to get out of that. Medicare doesn't care what condition a person is in .. if you're on dialysis, you MUST physicallly see a nephrologist once a month.The CNA will come today. DH's sister told me she'd come one afternoon this week to help sort some books. She hasn't come yet if she doesn't come today, I won't bother to call her. She's always saying call if you need anything .. but what's the use if she doesn't show up anyway?
My friend *might* show up today; but she's let me down so often I really don't count on anything.
My friend offered to stay with DH for a day so my DIL can take me to a Christmas parade (my DGD is in marching band in the parade). There is NO WAY I would leave her to take care of DH for a day! For one thing, every single time she comes over here she's limping and yelping how much this or that hurts .. she would not be capable of moving him. I dodn't know if anyone else would either, but I know she can't. For another, she gets all blubbery because the sound of the oxygen concentrator reminds her of her mom. And I won't leave DH with someone who claims to have so much "insight" that she knows how he feels and what he's thinking, even when he doesn't! And if she got all weepy again talking about her mom, I'm afraid she'd get him upset. So no matter how well meaning her offer was, that will NOT happen! If there's no one I can trust completely available at the time, then I'll have to wait for a different opportunity.
It's time to get this potentially busy day started.
Tuesday, November 19, 2013
Day 177
Day 177
Monday November 18, 2013
Physical:
DH was more "confused" than usual. I hope this isn't a trend - hard to tell. He was adamant that he get up .. but once in his chair, he went to sleep (though he did take his pills with no problems). After less than 2 hours he was ready to lay back down. After the adie got him bathed, he wanted to stay put .. but less than an hour after she left, he wanted me to get him up (which meant getting him dressed too). He stayed u until about 8:00; and he did eat a good dinner. (I haven't yet checked the floor to see how much of it went there).
Early this morning (Tuesday) he was trying to start the car; but when I told him it was too early to go to work, he went on back to sleep.
People::
The CNA came as mentioned. Late in the afternoon (actually after dark) DSS came by. I had gotten 2 sets of dialysis bags set up for heparin, so he doesn't have to come by later in the week.
I don't know if it has to do with how he does the injection or the heparin itself; but often .. as last night ... I get frequent alarms. It wasn't anything DH did (like rolling over on the tubing). It was a yellow screen, but I couldn't read it. I know it was on a "dwell" cycle .. seemed like the problem was in pumping solution into the "heater" bag.
Well, anyway, it was an interrupted night.
Emotions:
I got very frustrated and exhausted, so my feelings were all over the place, but not "true".
Monday November 18, 2013
Physical:
DH was more "confused" than usual. I hope this isn't a trend - hard to tell. He was adamant that he get up .. but once in his chair, he went to sleep (though he did take his pills with no problems). After less than 2 hours he was ready to lay back down. After the adie got him bathed, he wanted to stay put .. but less than an hour after she left, he wanted me to get him up (which meant getting him dressed too). He stayed u until about 8:00; and he did eat a good dinner. (I haven't yet checked the floor to see how much of it went there).
Early this morning (Tuesday) he was trying to start the car; but when I told him it was too early to go to work, he went on back to sleep.
People::
The CNA came as mentioned. Late in the afternoon (actually after dark) DSS came by. I had gotten 2 sets of dialysis bags set up for heparin, so he doesn't have to come by later in the week.
I don't know if it has to do with how he does the injection or the heparin itself; but often .. as last night ... I get frequent alarms. It wasn't anything DH did (like rolling over on the tubing). It was a yellow screen, but I couldn't read it. I know it was on a "dwell" cycle .. seemed like the problem was in pumping solution into the "heater" bag.
Well, anyway, it was an interrupted night.
Emotions:
I got very frustrated and exhausted, so my feelings were all over the place, but not "true".
Monday, November 18, 2013
Day 176
Day 176
Sunday, November 17, 2013
While Saturday was a very nice day, Sunday was a bit "odd". The day started out very early with DH throwing the covers off and trying to get off the bed. This went on multiple times over about a 3 hour period ... he had his mind set on getting up to find his lost ca keys. I had to go on and get him up by 10:00 or so for fear he'd manage to actually climb over the rail .. and get hurt in the process! Once in his recliner, though, he promptly went to sleep.
His sister came over around noon, and brought a lot of food from her cookout While she was here, TGF and the kids got here. (DSS was working on his shop while he had some help). After sister left, I got DH back to bed for a nap. We left the 15 y/o (he's actually very responsible), took the 2 little ones with us to get shopping done. That was not much of a "break", as those 2 fought and bickered the whole time. I had to put up with that when my boys were growing up .. I refuse to put up with it for someone else's kids, even if they are considered "bonus" grandsons. Anyway, we got the grocery shopping done. TGF had to be in another town by 5:00 to have her computer checked. When we got home with groceries, DSS wasn't there yet. So, we left one of the little ones and took the other with us. On the way home the car acted up (she says it's been doing that) .. got almost home and it quit running and didn't want to start again. She was very calm, but I was upset. Cars not running upset me, especially when I'm *trusting* someone else to take caere of it for me. She finally called DSS (who was at the house by then), and came and fiddled with something, and it finally started. He told me he thinks it needs a fuel pump or filter. (Frustrating how much it costs to keep a car running when I can't even drive!) When we finally got home .. found that DSS had gotten DH up! Well, good to know he had that experience by himself! It was already getting late, so they left (she said they'd get McD on the way home; we had the food sister had brought). I had to rush to get dialysis set up (and heparin will have to wait until Monday night). It was later than usual getting him to bedc. Just before going to bed he ate a barbecue sandwich and a bowl of banana pudding. He should have slept well .. he mostly did, other than the coughing. But he woke up way too early, and when I tried to convince him he was NOT in a movie theater, he begged me to take him home. That really tears at my heart. He's gone back to sleep finally. I hope he sleeps late and wakes up "at home"!
Sunday, November 17, 2013
While Saturday was a very nice day, Sunday was a bit "odd". The day started out very early with DH throwing the covers off and trying to get off the bed. This went on multiple times over about a 3 hour period ... he had his mind set on getting up to find his lost ca keys. I had to go on and get him up by 10:00 or so for fear he'd manage to actually climb over the rail .. and get hurt in the process! Once in his recliner, though, he promptly went to sleep.
His sister came over around noon, and brought a lot of food from her cookout While she was here, TGF and the kids got here. (DSS was working on his shop while he had some help). After sister left, I got DH back to bed for a nap. We left the 15 y/o (he's actually very responsible), took the 2 little ones with us to get shopping done. That was not much of a "break", as those 2 fought and bickered the whole time. I had to put up with that when my boys were growing up .. I refuse to put up with it for someone else's kids, even if they are considered "bonus" grandsons. Anyway, we got the grocery shopping done. TGF had to be in another town by 5:00 to have her computer checked. When we got home with groceries, DSS wasn't there yet. So, we left one of the little ones and took the other with us. On the way home the car acted up (she says it's been doing that) .. got almost home and it quit running and didn't want to start again. She was very calm, but I was upset. Cars not running upset me, especially when I'm *trusting* someone else to take caere of it for me. She finally called DSS (who was at the house by then), and came and fiddled with something, and it finally started. He told me he thinks it needs a fuel pump or filter. (Frustrating how much it costs to keep a car running when I can't even drive!) When we finally got home .. found that DSS had gotten DH up! Well, good to know he had that experience by himself! It was already getting late, so they left (she said they'd get McD on the way home; we had the food sister had brought). I had to rush to get dialysis set up (and heparin will have to wait until Monday night). It was later than usual getting him to bedc. Just before going to bed he ate a barbecue sandwich and a bowl of banana pudding. He should have slept well .. he mostly did, other than the coughing. But he woke up way too early, and when I tried to convince him he was NOT in a movie theater, he begged me to take him home. That really tears at my heart. He's gone back to sleep finally. I hope he sleeps late and wakes up "at home"!
Sunday, November 17, 2013
Day 175
Day 175
Saturday November 16, 2013
Physical:
This was a fairly good day. DH slept until around 2:00, and I got him up when company came. After they left he wanted to go back to bed, but I did persuade him to eat a bowl of soup first. Just as I was getting him up, we had a few more minutes of company; and then I got him to ged. That was around 5:00; later in the evening he semi-woke and watched his favorite show.
He coughed an awful lot during the night.
People:
This was an extraordinarily nice day. Two nieces, a nephew(in-0law), and a Totally Adorable great-nephew came by for a visit. They were here a couple of hours, and we both enjoyed the visit SO much. Plus, my niece helped me sort of box of papers .. was able to reduce it to a quarter of what it was!
After they left (as mentioned above), DH's cousin came by for a quick visit. His sister had a birthday party cookout, and since the cousin was so close they came by. The one disappointment (which fortunately, DH is not even aware of) is that his brother, who lives over an hour away, was at the party .. only 3 miles down the road from us. But he didn't come by or even call.
Emotions:
All over the place! I was anxious in the morning, wanting to be sure the house looked nice but frustrated at being unable to see other than that there was no "big" clutter on the floors. I was super happy during the afternoon, and DH seemed to be doing well with only some mild confusion (quite unlike this day has started!). I was disappointed about DH's brother not coming over; but I did get some very good news on the phone later in the evening.
Saturday November 16, 2013
Physical:
This was a fairly good day. DH slept until around 2:00, and I got him up when company came. After they left he wanted to go back to bed, but I did persuade him to eat a bowl of soup first. Just as I was getting him up, we had a few more minutes of company; and then I got him to ged. That was around 5:00; later in the evening he semi-woke and watched his favorite show.
He coughed an awful lot during the night.
People:
This was an extraordinarily nice day. Two nieces, a nephew(in-0law), and a Totally Adorable great-nephew came by for a visit. They were here a couple of hours, and we both enjoyed the visit SO much. Plus, my niece helped me sort of box of papers .. was able to reduce it to a quarter of what it was!
After they left (as mentioned above), DH's cousin came by for a quick visit. His sister had a birthday party cookout, and since the cousin was so close they came by. The one disappointment (which fortunately, DH is not even aware of) is that his brother, who lives over an hour away, was at the party .. only 3 miles down the road from us. But he didn't come by or even call.
Emotions:
All over the place! I was anxious in the morning, wanting to be sure the house looked nice but frustrated at being unable to see other than that there was no "big" clutter on the floors. I was super happy during the afternoon, and DH seemed to be doing well with only some mild confusion (quite unlike this day has started!). I was disappointed about DH's brother not coming over; but I did get some very good news on the phone later in the evening.
Saturday, November 16, 2013
Day 174
Day 174
(Thursday and) Friday November 15, 2013
Physical:
This has been a strange week. Thursday, after the CNA left (and DH had a brief nap) .. he decided he wanted to get up. Let me rephrase that. He *demanded* I take the rail off so he could get up. So, still against advice, I got him up. All the people that tell me he's too weak or I'll hurt myself aren't the ones here with a very determined old man ... in the end, I'm afraid he'll get hurt more if I don't get him up. It's no use trying to tell him any reason he can't, because he doesn't understnad; and most of what I say doesn't even register anyway.
So, he sat in his chair until fairly late. We had to wait for DSS to come so the heparin injection, so I was late getting dialysis set up.
But then on Friday, he slept most of the day. Late in the afternoon he was awake enough to want to watch TV; and he did demand to get up and sit on the commode. But then he was OK with going right back on the bed.
He was more or less "lucid" most of the time; but talking very slow and slurred. This morninng (Saturday) he's all upset and fretting about some one he was supposed to meet and he had given this person "everything we had" .. I had to do my best to reassure him we'd work it out. He did finally go on back to sleep.
His appetite remains a bit wonky. On Thursday night he ate barely half a bowl of sou, but Friday night he ate nearly a full bowl. Friday afternoon I had made him a ham sandwich (figures less "spillage") .. and later found about of third of it in the blanket.
People:
Only the CNA came on Thursday, plus DSS and TGF in the evening (briefly). Friday was very busy. The Dish guy came, had to reprogram remotes. DH never even woke up with the light and the TV on! Also during the morning the exterminator came, put out more mouse traps and bait (and plugged up the hole still under the house). Also the gas man came and got my oven pilot relit. Plus DSS was in the yard with someone who is (hoefully) buying a car from him.
I was hoping the soical worker would come by .. it's been 3 weeks ... but she didn't. I did hear that the reason I haven't gotten the signs for the door yet are that they had trouble finding someone to translate them That's odd .. I would have thought that as big an area as they cover they'd have had Spanish speaking patients, and therefore some staff who are multi lingual. Apparently not.
Today (Saturday) we're expecting a family visit. I am mega excited, haven't seen the girls in a long time. DH is excited when I tell him, but of course he doesn't remember.
Emotions:
I'm trying very hard to (1) keep myself busy; (2) let go of things (people) that do not make me feel happy; and (3) concentrate on things (family!!) to look forward to! (or for which to look forward). And when all else fails - eat chocolate.
(Thursday and) Friday November 15, 2013
Physical:
This has been a strange week. Thursday, after the CNA left (and DH had a brief nap) .. he decided he wanted to get up. Let me rephrase that. He *demanded* I take the rail off so he could get up. So, still against advice, I got him up. All the people that tell me he's too weak or I'll hurt myself aren't the ones here with a very determined old man ... in the end, I'm afraid he'll get hurt more if I don't get him up. It's no use trying to tell him any reason he can't, because he doesn't understnad; and most of what I say doesn't even register anyway.
So, he sat in his chair until fairly late. We had to wait for DSS to come so the heparin injection, so I was late getting dialysis set up.
But then on Friday, he slept most of the day. Late in the afternoon he was awake enough to want to watch TV; and he did demand to get up and sit on the commode. But then he was OK with going right back on the bed.
He was more or less "lucid" most of the time; but talking very slow and slurred. This morninng (Saturday) he's all upset and fretting about some one he was supposed to meet and he had given this person "everything we had" .. I had to do my best to reassure him we'd work it out. He did finally go on back to sleep.
His appetite remains a bit wonky. On Thursday night he ate barely half a bowl of sou, but Friday night he ate nearly a full bowl. Friday afternoon I had made him a ham sandwich (figures less "spillage") .. and later found about of third of it in the blanket.
People:
Only the CNA came on Thursday, plus DSS and TGF in the evening (briefly). Friday was very busy. The Dish guy came, had to reprogram remotes. DH never even woke up with the light and the TV on! Also during the morning the exterminator came, put out more mouse traps and bait (and plugged up the hole still under the house). Also the gas man came and got my oven pilot relit. Plus DSS was in the yard with someone who is (hoefully) buying a car from him.
I was hoping the soical worker would come by .. it's been 3 weeks ... but she didn't. I did hear that the reason I haven't gotten the signs for the door yet are that they had trouble finding someone to translate them That's odd .. I would have thought that as big an area as they cover they'd have had Spanish speaking patients, and therefore some staff who are multi lingual. Apparently not.
Today (Saturday) we're expecting a family visit. I am mega excited, haven't seen the girls in a long time. DH is excited when I tell him, but of course he doesn't remember.
Emotions:
I'm trying very hard to (1) keep myself busy; (2) let go of things (people) that do not make me feel happy; and (3) concentrate on things (family!!) to look forward to! (or for which to look forward). And when all else fails - eat chocolate.
Thursday, November 14, 2013
Day 172
Day 172
(Tuesday and) Wednesday November 13, 2013
Physical:
DH has only been out of bed once in the last 2 days. Both days when the CNA came, she had to clean him up .. so he doesn't seem able to tell, at least some of the time, when he has "to go". And he often thinks he does, but thinks he didn't "do anything" when he did. Yes, I know, TMI .. but these are the facts, folks!
Tuesday his appetite was way off, and he kept saying his stomach hurt. He didn't even want any homemade soup. By Wednesday night he did, and ate a fair sized serving (and with remarkably little spillage!). Pills are still a little bit of an issue
He does have a lot of congestion; but that's not particularly unusual. He hasn't been around anyone with a cold or anything.
His mental "trips" are getting worse. He has started occasionally getting angry with me if I tell him he's at home. It's getting tricky to figure out what to say at times. Especially in the middle of the night when he throws the covers off and insists it's time to get up.
People:
The CNA comes around noonish each day. Wednesday she got him shaved, and the sheets changed. She's admised me that he's too weak to be getting up; but it's hard to argue with him when his mind insists he can do what he wants.
The nurse came (even earlier) Wednesday. She noted the congestion, and how his speech was (often is) slurred. His sats were very good and he has no temperature (which means his stomach hurting is probably not infection - and he says it's better anyway. Perhsps he was hungry and no longer recognizes the feeling.)
Emotions:
I've been trying to keep busy so I don't sit around and feel sad. Unfortunately, the biggest project I need to accomplish is get clear out paper clutter. And it makes me mega frustrated to not be able to read things. I may be tossing important papers, but I can't hold on to everything; and there is absolutely no one who has time and/or inclination to help. I can't let all this clutter sit around until someone finds time and clearly volunteer help is not going to happen.
Tuesday, November 12, 2013
Day 170
Day 170
Monday, November 11, 2013
Rather than breaking it down for Monday, I'll just write a bit. DH had a fairly good night Sunday. But he just didn't want to get up. He went through a period Monday morning of wakefulness; but around 10:00 or so he went back to sleep. The CNA didn't come until late afternoon (which I knew about, so didn't have to sit around *waiting*). She said he told her he was too tired to get up because he'd been driving all morning. His mind wnet to the beach and back . sure wish he'd taken me along! She noted that he seemed very weak; and we both noted that his speech was very slow and slurred - usually a sure sign he's tired. I did take him a sandwich later (and today have to wash the blanket). He did take his pills, but it was slow.
In the late evening he insisted he get up to use the commode (actually, his mind told him he should just get up and walk to the bathroom .. he got very annoyed when he couldn't get the rail off, and demanded I take it off!). I had to stay with him, because even a brief time sitting there he was so tired he couldn't even sit straight.
He did eat another sandwich later, all I could persuade him to eat (only this one was ham so the filling wouldn't spill!!). And just before going to sleep he ate a bowl of sjerbert (and I barely got there in time to prevent the bowl from going on the floor when he was done).
Several times during the day he kept asking about "Stacy and Idelle". I had no idea who he was talking about. Then while sitting up, he asked how long since we'd seen the pennies. What?? Turns out he was asking about some people I don't ever remember even meeting. He seemed very disappointed to be told it was over 30 years since he'd seen them.
All in all, a rather strange day.
Monday, November 11, 2013
Rather than breaking it down for Monday, I'll just write a bit. DH had a fairly good night Sunday. But he just didn't want to get up. He went through a period Monday morning of wakefulness; but around 10:00 or so he went back to sleep. The CNA didn't come until late afternoon (which I knew about, so didn't have to sit around *waiting*). She said he told her he was too tired to get up because he'd been driving all morning. His mind wnet to the beach and back . sure wish he'd taken me along! She noted that he seemed very weak; and we both noted that his speech was very slow and slurred - usually a sure sign he's tired. I did take him a sandwich later (and today have to wash the blanket). He did take his pills, but it was slow.
In the late evening he insisted he get up to use the commode (actually, his mind told him he should just get up and walk to the bathroom .. he got very annoyed when he couldn't get the rail off, and demanded I take it off!). I had to stay with him, because even a brief time sitting there he was so tired he couldn't even sit straight.
He did eat another sandwich later, all I could persuade him to eat (only this one was ham so the filling wouldn't spill!!). And just before going to sleep he ate a bowl of sjerbert (and I barely got there in time to prevent the bowl from going on the floor when he was done).
Several times during the day he kept asking about "Stacy and Idelle". I had no idea who he was talking about. Then while sitting up, he asked how long since we'd seen the pennies. What?? Turns out he was asking about some people I don't ever remember even meeting. He seemed very disappointed to be told it was over 30 years since he'd seen them.
All in all, a rather strange day.
Sunday, November 10, 2013
Day 169
Day 169
Saturday November 9, 2013
PPysical:
While I don't especially notice any hysical changes (it's really hard to tell in someone who isn't ambulatory), he was a bit more fuzzy-minded. His speech was slurred, and got more so as he got more tired. He doesn't seem to be able to grasp things .. which is surprising considering his hands seem to remain very strong. He tried to put his supper tray onto the side table, and wasn't able to get it up about 3 or 4 inches (maybe it's arm strength that's the issue, not hands) .. and in the effort, his plate went on the floor. Upsidedown, naturally, with what was left of rice-and0gravy. Again. It's definately time to try something different, because he spills and drops everything any more. At least he's eating a bit better lately.
He has been sleeping OK, but Saturday night (Sunday morning) he woke up around 2:30 and demanded to be allowed to use the commode. The alarm woke me up, but I think he made it alarm on purpose instead of calling me.
The alarm went off several more times (he did not do that), so it was not at all a good night for me!
People:
It's rare to see anyone at all on a Saturday.
Emotions:
I got yet another disappointment - this one not exected. I'm trying not to care, just move forward with what needs to be done.
Saturday November 9, 2013
PPysical:
While I don't especially notice any hysical changes (it's really hard to tell in someone who isn't ambulatory), he was a bit more fuzzy-minded. His speech was slurred, and got more so as he got more tired. He doesn't seem to be able to grasp things .. which is surprising considering his hands seem to remain very strong. He tried to put his supper tray onto the side table, and wasn't able to get it up about 3 or 4 inches (maybe it's arm strength that's the issue, not hands) .. and in the effort, his plate went on the floor. Upsidedown, naturally, with what was left of rice-and0gravy. Again. It's definately time to try something different, because he spills and drops everything any more. At least he's eating a bit better lately.
He has been sleeping OK, but Saturday night (Sunday morning) he woke up around 2:30 and demanded to be allowed to use the commode. The alarm woke me up, but I think he made it alarm on purpose instead of calling me.
The alarm went off several more times (he did not do that), so it was not at all a good night for me!
People:
It's rare to see anyone at all on a Saturday.
Emotions:
I got yet another disappointment - this one not exected. I'm trying not to care, just move forward with what needs to be done.
Saturday, November 9, 2013
Day 167
Day 1678
(Thursday and) Friday November 8, 2013
Physical:
The last few days have been fairly uneventful. DH has been eating fairly well, sleeping through the night His confusion stays about the same (most of this week he's thought he was in a church), but nothing extreme. There have been no more episodes of loss of speech. His waking/sleeping are still somewhat at random, but he was up and in his chair most of the afternoons this week (which is good, since I keep forgetting to ask DSS to fix the over-bed table that I broke)..
People:
The CNA came as usual. On Thursday evening DSS came by.
Emotions:
I got some disappointing news, and totally over reacted. I don't know why, since it wasn't actually unexpected. But I think this is where my problem is. I over react. All my life I've been told I was "too sensitive". I never understood why it was OK for anyone to hurt my feelings, but was not OK for me to care. Now I'm finally beginning to understand. The only way to survive in this world is to be cold and hard-hearted. I don't know if I can be that, but obviously I need to try. Or at least I can try to quit caring so much about things.
If I don't care so much about physical things, it's easier to keep giving stuff away - especially since I can't even see most of them anyway. If I don't care about emotional things, then when I spend hours and hours sitting here alone .. no one to even talk to (except the cats) when DH is sleeping, and he usually has no idea what I'm talking about if he isn't I should be able to just work on cleaning dust and dirt that I can't see, or sit and stare into space, without *feeling* anything. If I can learn to stop feeling, I won't be sad or disappointed or lonely or scared or tired or frustrated or anything. This is a challenge to myself: stop feeling, stop caring. Just do what I have to do.
(Thursday and) Friday November 8, 2013
Physical:
The last few days have been fairly uneventful. DH has been eating fairly well, sleeping through the night His confusion stays about the same (most of this week he's thought he was in a church), but nothing extreme. There have been no more episodes of loss of speech. His waking/sleeping are still somewhat at random, but he was up and in his chair most of the afternoons this week (which is good, since I keep forgetting to ask DSS to fix the over-bed table that I broke)..
People:
The CNA came as usual. On Thursday evening DSS came by.
Emotions:
I got some disappointing news, and totally over reacted. I don't know why, since it wasn't actually unexpected. But I think this is where my problem is. I over react. All my life I've been told I was "too sensitive". I never understood why it was OK for anyone to hurt my feelings, but was not OK for me to care. Now I'm finally beginning to understand. The only way to survive in this world is to be cold and hard-hearted. I don't know if I can be that, but obviously I need to try. Or at least I can try to quit caring so much about things.
If I don't care so much about physical things, it's easier to keep giving stuff away - especially since I can't even see most of them anyway. If I don't care about emotional things, then when I spend hours and hours sitting here alone .. no one to even talk to (except the cats) when DH is sleeping, and he usually has no idea what I'm talking about if he isn't I should be able to just work on cleaning dust and dirt that I can't see, or sit and stare into space, without *feeling* anything. If I can learn to stop feeling, I won't be sad or disappointed or lonely or scared or tired or frustrated or anything. This is a challenge to myself: stop feeling, stop caring. Just do what I have to do.
Thursday, November 7, 2013
Day 165
Day 165
Wednesday, November 6, 2013
Physical:
It was not a "remarkable" day, which are beginning to be the "red letter" days. After his bath he was up in his chair for several hours. He had to have the TV so loud that I had to leave the room. In the mid afternoon he was ready to lay back down. I had gotten the bed remade with fresh sheets, so just got him undressed and back into bed. He woke up in the late afternoon, but didn't want to get up. After some evening TV (regularly watches "Big Bang" reruns from 7 to 8) and some super, he was ready to sleep.
He did wake up around 4 AM again, and throw the covers off But when I went in and covered him back up, said it was 4 AM and no matter where he thought he was (for the last 2 days he's been "in a church"), it was time to sleep He went back to sleep (took me much much longer).
He ate fairly well too; and took all his pills without protest.
People:
It was actually a nice day. The nurse came very early, as I sort of expected. She spent more time here than usual .. I think she wasn't feeling well, and said she was "comfortable". I welcomed the talk with her. Except, of course, she started on again about how I need to talk to the "family" about how they've got to find a way to help me more. I just agreed with her (and will talk to the boys at Thanksgiving); but nothing is going to change. The only one even remotely in a position to spend more time here is DSS. Not only is he too much in denial to handle it, his GF would resent it too.
The CNA came around mid day, got him washed up, and that's when he got up.
In the early afternoon, the chaplain came by. Wow, someone actually kept a promise! (when here last he'd said he'd come back in about a week and a half and tell us about his missionary trip to Ireland). He is a delightful story teller, and just made me want to go to Ireland more than ever. He also told us about the particular "outreach" program he was working with. What a wonderful program! I totally enjoyed his visit; and I believe DH did also. After the trip, we also talked a lot about family, holidays, and such. It was nice, and it was good that he was able to draw DH into the conversation a little bit.
emotions:
I wish I was better at expressing things. I seem to only be really good at getting across the wrong message. I don't like having to be "careful" what I say for fear of hurting someone's feelings. But the truth is, while I do welcome visits from friends, I ache for more closeness with family I understand everyone is spread far and wide, and all have very busy lives. Understanding doesn't mean I have to like it! Friends come and go (in my case, apparently mostly go); but family is a special bond.
On the mornings when my sleep has been interrupted - especially rainy mornings - I get very weepy. When I get back to sleep for short naps I have odd dreams (have dreamed about my parents often lately). I check email, and there's nothing there. And so another day starts.
As difficult as this is getting, I don't know how long I'll be able to keep up the blog, but I'll try.
Wednesday, November 6, 2013
Physical:
It was not a "remarkable" day, which are beginning to be the "red letter" days. After his bath he was up in his chair for several hours. He had to have the TV so loud that I had to leave the room. In the mid afternoon he was ready to lay back down. I had gotten the bed remade with fresh sheets, so just got him undressed and back into bed. He woke up in the late afternoon, but didn't want to get up. After some evening TV (regularly watches "Big Bang" reruns from 7 to 8) and some super, he was ready to sleep.
He did wake up around 4 AM again, and throw the covers off But when I went in and covered him back up, said it was 4 AM and no matter where he thought he was (for the last 2 days he's been "in a church"), it was time to sleep He went back to sleep (took me much much longer).
He ate fairly well too; and took all his pills without protest.
People:
It was actually a nice day. The nurse came very early, as I sort of expected. She spent more time here than usual .. I think she wasn't feeling well, and said she was "comfortable". I welcomed the talk with her. Except, of course, she started on again about how I need to talk to the "family" about how they've got to find a way to help me more. I just agreed with her (and will talk to the boys at Thanksgiving); but nothing is going to change. The only one even remotely in a position to spend more time here is DSS. Not only is he too much in denial to handle it, his GF would resent it too.
The CNA came around mid day, got him washed up, and that's when he got up.
In the early afternoon, the chaplain came by. Wow, someone actually kept a promise! (when here last he'd said he'd come back in about a week and a half and tell us about his missionary trip to Ireland). He is a delightful story teller, and just made me want to go to Ireland more than ever. He also told us about the particular "outreach" program he was working with. What a wonderful program! I totally enjoyed his visit; and I believe DH did also. After the trip, we also talked a lot about family, holidays, and such. It was nice, and it was good that he was able to draw DH into the conversation a little bit.
emotions:
I wish I was better at expressing things. I seem to only be really good at getting across the wrong message. I don't like having to be "careful" what I say for fear of hurting someone's feelings. But the truth is, while I do welcome visits from friends, I ache for more closeness with family I understand everyone is spread far and wide, and all have very busy lives. Understanding doesn't mean I have to like it! Friends come and go (in my case, apparently mostly go); but family is a special bond.
On the mornings when my sleep has been interrupted - especially rainy mornings - I get very weepy. When I get back to sleep for short naps I have odd dreams (have dreamed about my parents often lately). I check email, and there's nothing there. And so another day starts.
As difficult as this is getting, I don't know how long I'll be able to keep up the blog, but I'll try.
Wednesday, November 6, 2013
Day 165
Day 164
Tuesday, November 5, 2013
Physical:
What a weird day. He stayed in bed all day. I think he would have gotten up in the early afternoon but I goofed on getting laundry done, so had nothing for him to wear. And, he went to sleep. In the late afternoon (around 4:00) he wanted to get up to use the commode.
I was trying to keep an eye on him, but the phone rang. And in the short time I was gone, he deccided to get up. He landed on his knees, leaning over the bed. I tried and tried to get him up. I tried to call DSS and TGF, but didn't get answers. In the meantime, he lost his grip and slid over onto the floor. In the process, the catheter got hung on the bed frame and came apart. I caught it quickly enough, and got it clamped. But then I had to call the dialysis nurse to come out here yet again and repair.
Because of the antibiotic, I had to wait much later than usual to start the dialysis (to allow the antibiotic to dwell at least 5 hours). He did eat well though, for a change.
His hearing is getting really bad, that's a conceern.
People:
The CNA came as usual. The neighbor brought over a plate of food (nothing he would eat, but I enjoyed it).
I finally got hold of TGF in the evening, and she came with her oldest son to help me get DH up off the floor. And, as mentioned, the dialysis nurse came out and got him put back together.
Emotions:
The nurse came early this morning. She keeps telling me I need to talk with "family" (meaning sons) because I can't keeP doing this alone. Well ... I can if I have to. My DS lives 2 hours away, and has a job, a wife with health issues, and 2 very active teens. DH's son is trying to run his own business; his GF is working full time, going to school full time, and has 3 active boys that are into sports, church, etc. No body has time to be out here any more than they already are. TGF sort of knows how it is; DSS is even more into denial than I am (at times).
I just can't stop being sad all the time.
Tuesday, November 5, 2013
Physical:
What a weird day. He stayed in bed all day. I think he would have gotten up in the early afternoon but I goofed on getting laundry done, so had nothing for him to wear. And, he went to sleep. In the late afternoon (around 4:00) he wanted to get up to use the commode.
I was trying to keep an eye on him, but the phone rang. And in the short time I was gone, he deccided to get up. He landed on his knees, leaning over the bed. I tried and tried to get him up. I tried to call DSS and TGF, but didn't get answers. In the meantime, he lost his grip and slid over onto the floor. In the process, the catheter got hung on the bed frame and came apart. I caught it quickly enough, and got it clamped. But then I had to call the dialysis nurse to come out here yet again and repair.
Because of the antibiotic, I had to wait much later than usual to start the dialysis (to allow the antibiotic to dwell at least 5 hours). He did eat well though, for a change.
His hearing is getting really bad, that's a conceern.
People:
The CNA came as usual. The neighbor brought over a plate of food (nothing he would eat, but I enjoyed it).
I finally got hold of TGF in the evening, and she came with her oldest son to help me get DH up off the floor. And, as mentioned, the dialysis nurse came out and got him put back together.
Emotions:
The nurse came early this morning. She keeps telling me I need to talk with "family" (meaning sons) because I can't keeP doing this alone. Well ... I can if I have to. My DS lives 2 hours away, and has a job, a wife with health issues, and 2 very active teens. DH's son is trying to run his own business; his GF is working full time, going to school full time, and has 3 active boys that are into sports, church, etc. No body has time to be out here any more than they already are. TGF sort of knows how it is; DSS is even more into denial than I am (at times).
I just can't stop being sad all the time.
Tuesday, November 5, 2013
Day 164
Day 164
Monday, November 5, 2013
Physical:
As usual, the last few days have been full of ups and downs. Saturday DH never got out of bed all day. He dozed off and on; but seemed in a more depressed than usual mood. Getting him to eat is hard, and getting him to take his pills was harder. On Sunday, he didn't even want to get upp when DSS got here. I left to do my errands; and when we got back (dark already, thanks to time change), he was demanding to get up "because it was time". So, he was up around 6:30 and wouldn't go to bed until after 10:00 (which makes for a very long day for me!). Monday morning he was ready to get upp. The CNA didn't come until early afternoon, at which time he was ready for a nap. He slept all afternoon, but then wanted to get up again. He didn't stay up as late .. was settled down by 9:00 ... but at 2:00 AM he had another of his "episodes". It was very hard to convince him that it was NOT time to get up and go somewhere. I finally told him quite sternly to roll over on his side and go to sleep. I think I sounded like his mother at that point, so he did.
Something else that's become much more pronounced in the last wee is that he's becoming very hard of hearing. He keeps wanting the TV turned very loud. I have to repeat a lot I say, and have to talk louder and louder. I need to ask the nurse if this is "normal progression".
People:
There is rarely anyone here on Saturdays. On Sunday we had the usual family gathering (DSS, his girlfriend, her boys) I believe those boys make DH a bit nervous. They have not been part of the family long enough for him to have formed much attachment to them. They frequently go in and out, back and forth (have to pass DH's chair to go to the bathroom), but rarely even speak to him. I think that has his world grows smaller, and long past memories surface, his son (and the 4 "original" grandchildren) are the ones important in his mind.
Monday was only the CMN.
Emotions:
I sometimes wonder if I made a mistake by starting this blog. It's mainly dreary and depressing. But if I don't have somewhere to express all the feelings I'm going through, I think I might explode!
I *know* that sometimes the best thing to do is get busy with something. Just knowing something doesn't necessarily make it easy to do. It is frustrating beyond anything I can express to have such limited vision, and it growing worse at an alarming rate. That makes anything I try to do so much harder. And it's both frustrating and depressing to have things be piling up that I need help with, but no one has time to bother. It appears there just isn't going to be any "volunteer" help for us, despite what we were originally told. As the CNA pointed out, none of them "have" to go help anyone if they choose not to .. and it certainly feels like all the volunteers choose not to come way out here. (the volunteer coordinator called me - can't remember if I said already - she asked me several times if *I* needed help or if DH needed something. Although that's also quite contrary to what we were told, I don't think she wanted to find someone just to help me. My vision has nothing to do with his care. Apparently giving me anything vaguely resembling a "break" is too).
On Saturday I made up my mind to at least try to do something. I made a list of 7 items; and got 5 of them done. And yes, it did help .. I was too tired to be sad! LOL! On Sunday morning I finished the list, plus a few more things. But then I had nothing to do but sit and wait for hours.
Monday was similar. It was so late by the time I had gotten DH settled, and I was SO tired, I didn't get u early enough. So a huge mess in the kitchen had to wait until late afternoon (during the winter daylight hours the light in my kitchen window is too bright for my eyes to tolerate. I haven't tried wearing sunglasses to do dishes - maybe I will).
I thought today (Tuesday) I'd get a fresh start. But the 2 AM episode ruined my night's sleep, so I really had to struggle to get up. Some things will get done .. others I will hope for tomorrow!
Meantime .. I still feel sad. I spend many many hours here with no one but the cats to talk to. And when I do talk (yell) to DH, he often has no idea what I'm talking about. The man I used to know is long gone, and I think that's the most depressing thing of all.
Monday, November 5, 2013
Physical:
As usual, the last few days have been full of ups and downs. Saturday DH never got out of bed all day. He dozed off and on; but seemed in a more depressed than usual mood. Getting him to eat is hard, and getting him to take his pills was harder. On Sunday, he didn't even want to get upp when DSS got here. I left to do my errands; and when we got back (dark already, thanks to time change), he was demanding to get up "because it was time". So, he was up around 6:30 and wouldn't go to bed until after 10:00 (which makes for a very long day for me!). Monday morning he was ready to get upp. The CNA didn't come until early afternoon, at which time he was ready for a nap. He slept all afternoon, but then wanted to get up again. He didn't stay up as late .. was settled down by 9:00 ... but at 2:00 AM he had another of his "episodes". It was very hard to convince him that it was NOT time to get up and go somewhere. I finally told him quite sternly to roll over on his side and go to sleep. I think I sounded like his mother at that point, so he did.
Something else that's become much more pronounced in the last wee is that he's becoming very hard of hearing. He keeps wanting the TV turned very loud. I have to repeat a lot I say, and have to talk louder and louder. I need to ask the nurse if this is "normal progression".
People:
There is rarely anyone here on Saturdays. On Sunday we had the usual family gathering (DSS, his girlfriend, her boys) I believe those boys make DH a bit nervous. They have not been part of the family long enough for him to have formed much attachment to them. They frequently go in and out, back and forth (have to pass DH's chair to go to the bathroom), but rarely even speak to him. I think that has his world grows smaller, and long past memories surface, his son (and the 4 "original" grandchildren) are the ones important in his mind.
Monday was only the CMN.
Emotions:
I sometimes wonder if I made a mistake by starting this blog. It's mainly dreary and depressing. But if I don't have somewhere to express all the feelings I'm going through, I think I might explode!
I *know* that sometimes the best thing to do is get busy with something. Just knowing something doesn't necessarily make it easy to do. It is frustrating beyond anything I can express to have such limited vision, and it growing worse at an alarming rate. That makes anything I try to do so much harder. And it's both frustrating and depressing to have things be piling up that I need help with, but no one has time to bother. It appears there just isn't going to be any "volunteer" help for us, despite what we were originally told. As the CNA pointed out, none of them "have" to go help anyone if they choose not to .. and it certainly feels like all the volunteers choose not to come way out here. (the volunteer coordinator called me - can't remember if I said already - she asked me several times if *I* needed help or if DH needed something. Although that's also quite contrary to what we were told, I don't think she wanted to find someone just to help me. My vision has nothing to do with his care. Apparently giving me anything vaguely resembling a "break" is too).
On Saturday I made up my mind to at least try to do something. I made a list of 7 items; and got 5 of them done. And yes, it did help .. I was too tired to be sad! LOL! On Sunday morning I finished the list, plus a few more things. But then I had nothing to do but sit and wait for hours.
Monday was similar. It was so late by the time I had gotten DH settled, and I was SO tired, I didn't get u early enough. So a huge mess in the kitchen had to wait until late afternoon (during the winter daylight hours the light in my kitchen window is too bright for my eyes to tolerate. I haven't tried wearing sunglasses to do dishes - maybe I will).
I thought today (Tuesday) I'd get a fresh start. But the 2 AM episode ruined my night's sleep, so I really had to struggle to get up. Some things will get done .. others I will hope for tomorrow!
Meantime .. I still feel sad. I spend many many hours here with no one but the cats to talk to. And when I do talk (yell) to DH, he often has no idea what I'm talking about. The man I used to know is long gone, and I think that's the most depressing thing of all.
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